Gi Saga Continues...

[wareagle]

Hi guys...I'm sorry I haven't been around much..I've been so sick and scared..I'm at the end of my proverbial rope.

I've been having chronic diarrhea for 2 months now..some of you may remember I had some sort of GI attack 4 weeks ago and went to the ER...with no answers. I saw my POTS doc. that next week and he ordered stool tests and a ultrasound of my gallbladder along with some blood work. Well..I finally got the ultrasound and stool tests done and had to fight to get the results to my doc. then once the results were in last Thurs. I didn't hear anything from my doctor.

Friday night I had another attack...the pain started in my back right below my shoulder blades then wrapped around to the front until I felt like my rib cage had me in a vice grip...got very weak, sweaty, horrible pain just like last time..only THIS time I started vomitting. It was terrible...my Mom was about to take me to the ER again when it all abruptly stopped..again. (it tends to last about an hour)

So...all weekend I've been terrified very sick and weak..emotional...

Monday morning I called my doc. and left a message that I really needed to speak to him and get the results of my tests....at 3:00 I still hadn't heard anything so I called back only to find out that my doc. had left for the day!! The woman I spoke to went and got my test results and said that everything came back "normal"...I asked her to please contact my doc. and ask him to call so that I could speak with him and find out what was ruled out by the tests and what to do next.

Well...she called back and said that my doc. said there was nothing more he could do as this wasn't his area... I felt like an abandoned child... he didn't even refer me to another doctor..I mean my POTS doc. has always been so great and supportive..I can't believe he couldn't even talk to me for 5 minutes!!

So I've made an appointment for tomorrow with a GP in my area to see if maybe she'll be able to point me in the right direction. I'm just so upset...I feel like I did when I first got sick with POTS...for over a year I was just tossed from doctor to doctor none of them really caring what happened to me. I feel like once again I've been left alone out on a limb...I'm just so tired of having to fight for everything.

I know a lot of you have GI issues like celiac sprue and IBS...I've been trying to research digestive disorders to get an idea of what testing is involved. Is there anyway to diagnose these problems WITHOUT haveing invasive testing done? My back has been so sore and tight since my first "attack"...I just don't know what could be causing all of this...the diarrhea I can live with..but I can't live with these painful attacks.

Any advise or info. you guys can give me is much appreciated...I just want to be really prepared for my apt. tomorrow and I want to ask the right questions.

Sending love to you all!

[goldicedance]

So sorry about your problems. Perhaps you should ask for a HIDA Scan with contrast. That is the gold standard to rule out gall bladder disease.

I had my gall bladder removed. Unfortunately, I still have chronic diahhrea. I am now on phenergran (spelling) and that has been a big help.

Please go to a GI specialist!

Feel better,

Lois

[Dizzy Dame]

I have chronic bowel problems that land me in the hospital too, although mine have to do with aemobas I contracted years ago when I was living in Ecuador. They did permanant damage to my GI tract . It's very frustrating being so sick with no help. THe doctors in this country are a sorry lot. They're so scared of lawsuits they head for the hills any time an "abnormal" patient comes in.

I do hope you get some answers and relief soon!

Hugs,

Lauren

[wareagle]

Thanks guys! After reading your suggestion of a HIDA scan Lois I did some searching of past post regarding gallbladder disease. I didn't realize that you could have a "normal" ultrasound and STILL have gallbladder problems. I have a sinking suspicion that it IS my gallbladder that's acting up...the symptoms seem to fit it to a tee. I will definatly request a HIDA scan when I see the doctor tomorrow...I'm also counting on her referring me to a GI specialist...I would make my own apt. with one but usually with specialist you have to have a doc. referr you.

I have a question for those of you who have had gallbladder problems...is there ANYTHING I can do in the time being to prevent another attack? I have been living on oatmeal, chicken soup, bananas and applesauce for over a month now...last Friday when I had my latest episode I had eaten a huge meal of shrimp, french fries and a crab cake...I know..I know...I cringe when I think of it now. I had eaten the same thing the two previous Fridays though without problems so I didn't really think about it.

My mom always gets us "restaurant" food on Fridays since I can't go out to eat and I guess I got a little carried away...I've just been so hungry...oatmeal only goes so far!

I remember someone mentioned eating baby food after a gallbladder attack...anyone else have any suggestions? I'm not trying to get ahead of myself..I know it could be something else....

BUT if it is my gallbladder...are there any other treatments besides surgery? I've tried to research but all I've found is info. on gallstones....uggggggggg....HELP!!

[DSM3KIDZ]

I recommend to see a Gastro Doc. I also second the Hida Scan. I am so sorry to hear your suffering. I hope the pain ends soon

Hang in there and keep us updated

Dayna

I just read your last post. Do a search on Cholecystitis. I have gallbladder diease but still have my gallbladder since I don't have any pain yet. Anyways the doc said I have Cholecystitis and told me to have surgery but I went for a second opinion and my new GI said not to have surgery.

Dayna

[Jillybeanbme]

I'm also counting on her referring me to a GI specialist...I would make my own apt. with one but usually with specialist you have to have a doc. referr you.

Wareagle,

You live by Pensacola don't you? You DO NOT have to have a referral to the GI Docs at the Medical Center Clinic, unless your insurance requires you to have a referral. Dr. Ronald Powell there has experience with dysautonomia patients.

Jill

[MightyMouse]

It's possible you could have a motility problem with your gallbladder (I did). The type of HIDA scan that can identify this is a CCK HIDA scan; this would be something to consider asking your doctor about...

If it is your gallbladder doing this, then no, there's nothing to prevent the attacks--although avoiding high fat foods supposedly helps, it never did anything for me.

As for dealing with the attacks once they start, I used to take bentyl, and now I take levsin sublingual. While taking my gallbladder out helped me tremendously, I still have problems with my sphincter of odi going into spasms from time to time. This usually hits me in the wee hours of the morning--like around 3am, b/c this is when one's body makes all their bile for the following day, and if I still had a gallbladder, it would dump the bile in there for use when needed.

I hope you get help. Also, I hope you can get yourself a doctor who is more responsive and who is willing to be a good detective for you--and wont stop until you're out of pain and/or all better.

Nina